Tag Archives: Neurology

There were few things that led us more astray than the idea of autism being a developmental delay. Last week Emma wrote, “Autism is not a developmental delay, rather it is a different road entirely.” I was reminded of this last night as I watched a video from 2006 when we took Emma, who was then four-years old, to meet the late Stanley Greenspan. (This post is not about Stanley Greenspan or his method. His name is brought up only because of the video that inspired this post.)

Watching that video last night was brutal. The private hell of regret is a cruel place to linger. Emma described her experience of watching the video last night as “wading into the marsh of worry and fear, but quiet love was there even when the days were dark.” In typical Emma-fashion she generously and compassionately reminded me that it was not all an unmitigated hell. Unable to communicate her complex and insightful thoughts with spoken language, she languished for years in an abyss of being constantly underestimated and misunderstood. Because people assumed she spoke what she intended and meant, she was penalized for the words she managed to utter. “Do you want to go fast or slow?” “Do you want to stop or go?” “Do you want to open the door or close it?”

Again and again the video shows us making assumptions about her actions. We assume she has no interest in engaging. We assume she doesn’t want to spend time with us. We assume she is “in her own world.” We make assumptions and we behave according to those mistaken beliefs. We believed each word was a milestone, paving the way for more language acquisition. We believed it made sense. Lay the foundation, create a strong base of words for more to follow… Use your words, use your words, use your words…

The assumption that her spoken language represented her comprehension and intelligence and therefore we needed to push for more was never disputed. This idea of a developmental delay bled into every single aspect of her being. It was believed that her speech was delayed, as were her fine and gross motor skills. Therapies were structured around this concept. All held the promise that if we did intensive, ongoing therapy she would one day, catch up, particularly if we did this during that brief window of opportunity, before she turned three, and then four, maybe if we were lucky, we hoped, the window would still remain open at five, what about six? At the time we didn’t question any of this. Had we known then that she probably already knew how to read, had we understood that what she said, was not representative of her intelligence or indicative of what she understood or knew, if we’d known that autism was not a developmental delay, but rather a “different road entirely”, it would have changed the path we proceeded down.

As it was, we did not know. We listened to the many professionals we consulted. Well meaning professionals, often incredibly kind and thoughtful, a few even brilliant, but none, not a single one ever mentioned the concept of a body/mind disconnect or how that might apply to our daughter. It never once occurred to me that maybe, just maybe what she said was not what she intended to say. It did not enter my mind that when she didn’t answer a question it was because she knew the answer, but couldn’t say the words, this thought, this idea was not something I even knew to consider. We would learn about all of this much, much later and when we did hear these ideas, it came from the most unexpected source – our own daughter, Emma. Not only was she the person we least expected to enlighten us, but she did so, not through spoken language, but by typing. Eight years ago, I don’t know that I would have believed any of this, let alone that Emma would write about all of this in such detail, as she has in these posts:

Parents who are just getting a diagnosis for their young children have so many more resources available to them than we had in 2004. The most important being, blogs written by Autistic people of all ages, non-speakers, speakers, semi-speakers and everyone in between. It is the writings and friendships I now am fortunate enough to enjoy, that have helped me more than anything else. One day I hope the professionals parents are introduced to will be Autistic professionals.

My friend Bridget of the blog, It’s Bridget’s Word said to me, “The ‘delay’ concept is a trap. Development is not linear no matter how many folk whose livelihood depends on timetables try to make it.”

My friend Ibby, educator and author of the blog, Tiny Grace Notes, who is like family to me, said, “Speaking now as an education professor: “developmental delay” is an actual category under the IDEA which is not allowed to be used after the age of eight. The purpose of it was to give people with conditions in which they might “catch up” a chance to do so, and the doctors more time to pinpoint their diagnostics if not. If you look at the lists for most states of what conditions might cause “developmental delay” to be diagnosed before age 5 (as it has to be in most states) it makes some sense as being this sort of thing. Autism is not a “delay” but a condition causing atypical (as opposed to delayed but still on the same track of typical) development.”

Ibby added, “In short, this is not only dangerous and unhelpful but technically ignorant even if separated from the consequences.”

So what are the consequences of believing autism is a developmental delay?

Well, for us it meant constantly comparing our daughter to her non autistic peers (using their development, and not hers, as the ideal). It meant pursuing all kinds of therapies that never questioned the push for spoken language. It meant not considering AAC devices, because she “had language.” It meant encouraging my daughter to “use your words.” It meant asking her to focus on things that made it impossible for her to concentrate on what was being taught. It meant looking at her through the lens of deficits, so much so that they became blinders shutting out everything else.

There are so many things Emma can do, that I cannot. Her mind, as she so beautifully described it, is a “wonder, channel changing, multi-screened on fast forward” thing of beauty that defies all limits placed upon it. My daughter amazes me every, single day. As always, Emma said it best and it bears repeating, “Autism is not a developmental delay, rather it is a different road entirely” and what an amazing road it is!

Perhaps the single most insidious and ultimately destructive promise during those early years after my daughter was diagnosed was the idea of “recovery.” There were a multitude of different diets, the gluten-free/casein free diet and the GAPS diet, that some said had “recovered” their child, making them indistinguishable from their peers. There were the bio-med treatments ranging from daily B-12 shots, hyperbaric chambers, ointments applied topically, vitamin supplements, chelation, homeopathic and naturopathic remedies to stem cell treatments. There were the therapies that made up the center piece of books claiming full recovery and the many doctors and specialists who supported them.

In the beginning we were terrified. I still remember that feeling. The nights of not being able to sleep, staring at the ceiling and worrying only to finally slip into a semi-conscious state of fitful sleep. The next morning, there were often those first 60 seconds upon waking when I’d forget the worries that had kept me up. Then reality would come rushing back and it was like being thrown into a bottomless pit of worry, stress and terror. The fear was relentless and was fueled by just about everyone we came into contact with. Our child was far too young to have predictions made about her future, and yet people made them and all of them except those stories of “recovery” threw me into further fear.

People compared her neurology to cancer or Parkinson’s and likened the various therapies and treatments to chemo; a necessary horror that no one enjoyed, but that must be done. And I believed them. I had to save my child. I would do anything to save my child. Various things were deemed more acceptable than others, but dig deep enough and you can find any number of people, doctors and specialists who swear by whatever it is they believe will transform a child who does not speak, who seems so frustrated and unhappy into a speaking child who is no longer in pain. Had this not been the case, had they not claimed complete “recovery” we would not have subjected our child to any of it, but instead, we tried all of them.

So much of what we were told seemed to coincide with what we were seeing. My daughter could not use spoken language to speak. She seemed to be in almost constant internal discomfort. She cried, gut wrenching screams of pain, regularly. Her sleep was erratic, her behavior confounding, her distress with things I couldn’t understand seemed constant, her inability to communicate what was going on made it all the more confusing. So many of the professionals we took our daughter to seemed convinced that their treatment or remedy or whatever it was would be the thing that changed everything. I desperately wanted her to not be in pain. I desperately wanted her to be able to communicate. I wanted nothing more than to ease her frustration. For years I never thought – perhaps everyone is thinking about all of this wrong.

So on one hand we were introduced to autism as a horrible thing, but that there were people and things that could “treat” it and if we were lucky she could “recover” and on the other hand we were told no one knew what caused it and there was no cure. It is this, seemingly two opposing thoughts, that many parents are introduced to. It is no wonder so many choose to believe the former and not the later, even when, in doing so, we head into a labyrinth from which there is no end. The third idea, that this is a different type of neurology and to compare Autistic neurology with non autistic neurology is detrimental to all involved and to suggest that one neurology can be trained to become a different one is not only an unachievable goal, but an unworthy one, was not introduced to us until much later.

There is nothing quite so awful as to see your child through the lens of those who are seeing nothing but deficiencies, challenges and problems. Assumptions are made about intelligence based on tests used for a different neurology. I often wonder what we would have done had we been introduced to Autistic people who didn’t use spoken language, but who typed to communicate. Would we have been so frantic? I don’t know. What I do know is that rethinking everything we once believed, refusing to submit to the idea that autism is the source of all that is wrong, seeing how non autistic neurology has its own set of deficits and challenges, and finding a way for our daughter to communicate has changed everything. If we spent even a small percentage of the money currently being spent on autism and autism research, on finding better ways to support our non-speaking kids so that they too could communicate using stencil boards, letter boards and typing keyboards, at least some of the panic many parents feel would subside.

I began this blog in April, 2010 as a document of what I thought would surely be our finding a cure for my daughter’s autistic neurology. At the time I did not question that this was a worthy goal and one I should be pursuing. At the time, all I could see were the things challenging her, making her life more difficult with no upside. She was, I thought, the victim of a neurology that caused her nothing but pain and suffering. It was not until I was confronted with the joys, things that I had witnessed right from the beginning of her life, but, after receiving her diagnosis then ignored and dismissed, that I began to appreciate the more complex truth about autism and what that might mean to her. I could not have imagined that four years later my daughter would be posting her profound insights about life, her neurology and the impact society has on her, not because we found a cure, but because we didn’t.

For those of you who have read this blog from the beginning, or poked around and read a post or two from those early days or those who’ve looked through the archives of the pieces published on Huffington Post, you will see a transformation. It is not a transformation of my daughter’s neurology as was once my goal, but a transformation of our thinking, and as a result the impact our thinking has had, not just on her self-esteem, but on our ideas about ourselves, individually and as a family. We had to examine and question our own neurology and the challenges we face as a result, before we were able to fully appreciate hers.

We do not take credit for who she is becoming. We cannot. My daughter is strong, stronger and wiser than I have any right to claim influence on. While it has certainly helped that we no longer fight against her neurology, but instead encourage, support and provide her with the help she needs to flourish, it would be wrong to suggest who she is and is becoming is all due to us. Had we not found people who believed completely in her, people who saw beneath the words she spoke, the way her body moved, had they not shown us and encouraged us to question our beliefs and set them aside, to look beyond what we thought we were seeing and what that meant, we would still be lost in the horror of what we once thought and were told “autism” meant.

This concept, that of helping an Autistic child flourish to be all they autistically can be, is counter to all that we non autistics are told and urged to believe. So much of the focus is on making our Autistic children behave and appear less autistic-like. Appearing non autistic is the emphasis and the fact that this comes at a price, is not often spoken of or even considered among the non autistic population. Many people see Autistic people, witness their inability to say what they feel and think, and believe there is nothing more to see. They come to conclusions, having witnessed the person’s movement, their facial expressions or lack of, and believe what they see and what they then conclude is the “truth”. Assumptions can create all kinds of misunderstandings that hurt a population who do not follow the unspoken rules of a majority.

(Trigger for abuse contained in links) Misunderstandings that then lead to abuse. Beliefs, like this and this are expressed and taken by many as fact, regardless of how misinformed, regardless of how shoddy the reporting, which further harm people and children, like my daughter. The cure I seek now is for our society. A cure for intolerance, sameness at any cost, and for those who seek to silence those who cannot speak with spoken language, but who have a great deal to say through the words they write, is what I dream of.

One of the many down sides of non autistic neurology is how we struggle mightily to blend in, to fit in at all and any cost. We strive to be better than, to keep up appearances, to cover our awful feelings of insecurity and discomfort with pretense and by controlling those around us. Some become obsessed with money and power and yet once they have both, they use it to further separate themselves. Where and what is the cure for that?

This is the journey I now find myself on. There are others farther ahead, I am doing my best to follow. There are many who learned all of this sooner than I did. There are some who will read this and because they have been on this road longer, will see how far I still have to go, but this is a trek, the best sort of trek, filled with discovery and beauty. Emma is leading the way now. I really am just trying my best to keep up, while remaining open to all that I still do not know, but am eager to learn.

When I first learned about autism, as defined by many organizations, I understood it to be a “disorder,” with “social impairments” being one of its defining characteristics. As autism was also spoken of as meaning someone who did not and could not understand others, and that the very word “autism” stemming from the Greek word “autos” or “self”, suggested a person who had little interest in other people, I assumed this meant my child didn’t care about or want to make friends.

Add to this the unfortunate wording of what so many of our kids engage in – “self stimulation” – which to my ears anyway sounded vaguely masturbatory, and as we live in a society tending toward the puritanical, self stimulation, even to my liberal notions, carried with it a decidedly negative connotation. The word “stimming” is a bit better, but even so, I cannot get away from the sense that this feeds into those negative assumptions about intent and a lack of interest in connecting with others, which is still believed by a great many.

When my daughter described stimming as “self-care” (you can read that post ‘here‘) I was filled with admiration. Self care is such a wonderful way to describe what I see her doing. Self care is not about rejecting others, but instead describes a way of regulating oneself so that one can engagewith others. This idea that autism means disinterest in other people, an idea so many have embraced, does not describe my daughter at all. To the contrary, my daughter and so many of my friends who share her neurology care deeply and take tremendous pleasure in their various relationships, just as those who are not autistic do. (That this last sentence is even necessary to write, demonstrates how far we have to go.)

This idea that autism characterized by “social impairments” is something that drives me crazy. It isn’t a social impairment. It’s a complete misrepresentation and misunderstanding of what autism means to those whose neurology is called autistic. My daughter does not lack a desire for friendship or have a disinterest in other people. Unable to often communicate what she intends, constantly distracted by things others cannot and do not necessarily see, hear or feel and a need to move her body in ways others misinterpret, it is no wonder “friendships” present a whole series of issues for her.

So many of the assumptions about autism, based on what non autistic people witness and believe they are seeing and the theories they then develop supporting these assumptions continues. Assumptions, spoken of as though fact, with therapies devised to “help” what is assumed to be true and yet, is not, is based on a false premise. But when we were given Emma’s diagnosis, I did not question these various theories. I, as did so many others, took them at face value, believing that though there was much we still did not know about autism, these beliefs at least, were some of the things we DID know about autism and by extension autistic people.

The degree of arrogance displayed by more than a few who claim to be “experts” with decades of hands on experience in the field of autism is absolutely staggering. Their arrogance is only rivaled by their mindset of assuredness. They are unwavering in their absolute knowing about a neurology that continues to baffle the best neuroscientists in the world. These practitioners not only speak from a place of “authority” they are imperious, contemptuous and profoundly scornful of any who suggest they might want to consult with a few people who are actually living their lives with the neurology these so-called experts claim to understand and know all about.

We have run into more than a few of these professionals over the years. These are the people who fill me with fear. They come into contact with hundreds and thousands of children over their decades of “expertise” and it terrifies me. They win grants and are paid to speak at conferences. Their opinions are sought by a great many. They swagger about with their self importance, wearing their years of working with the Autistic population as though it were a badge of honor. They think nothing of grouping an entire neurology into a small, convenient box labeled “autism”.

They smirk and posture and plaster their walls with their many credentials and degrees. They make sure everyone understands exactly how many years they’ve been working in the “field.” They say things like, “autistic children are…” accuse those they disagree with of “falsehoods” and go on at length about how they know what “autistic children” want, need and care about. They are profoundly dismissive of those who actually ARE Autistic and who dare question or disagree with them. Instead of listening to the very people they claim to know so much about, they silence with words of contempt. They attack. They strike out, bring in reinforcements of like-minded colleagues. Sometimes they even target someone, almost always someone who is autistic, and try to do damage to them by contacting their employers, or those they have professional contact with.

I used to be shocked that such people would choose to be in a profession where the people they are supposedly wanting to help, end up being the very people they silence and hurt. It used to surprise me when I would read comments by people who have no trouble using language either written or spoken to get their point across, dismiss and question someone who does not enjoy the same ease with which they do, to communicate. I used to be naive enough to believe those calling themselves an “expert,” and had degrees suggesting study and dedication in their given field was further evidence of their title.

I used to believe in a great many things.

*This post is not about any one person, but about the dozens of people I’ve met over the years who fit the above description. There are many people, both autistic and non autistic, who have dedicated their lives to autism, who (thankfully) do not fit this description. They are open to new ways of thinking, they are actively listening to those who have different experiences than their own. All of them are engaged in learning, discovering, uncovering more information and examining what they think. They are operating from a place of humility, and to those people I am profoundly grateful.

What We Would Have Done Differently Had We Known What We Know Now is the longer version of the above title for this post.

Someone left a comment on a post I wrote about a year and a half ago – Want to Know About Autism? Ask An Autistic. In the comment they asked a number of questions and because they are questions others have also asked, I’m writing a post devoted solely to answering them.

“What would you have done with Emma if you had not fought your seven year war? How would you have spent that time with her knowing what you know now? What do you think would have been of most benefit to Emma when she was still too young to type? How would you have gone about learning assuming competence?”

“What would you have done with Emma if you had not fought your seven year war?”

The “seven-year war” they are referring to is one I describe in that post detailing all the things I did upon receiving my daughter’s diagnosis. To contemplate what we would have done differently had we known what we know now is both exhilarating and painful, but I’m going to give it my best shot…

The short answer is – we would have done everything differently. The longer answer is vast, so vast I don’t know that I can do it justice in just a few paragraphs, but I will try…

Once we were given her diagnosis I would not have done any of the therapies suggested other than occupational therapy. I know this will strike many as radical, even negligent, but I am speaking very specifically about my daughter. Right from the beginning, knowing what I know now, would have changed all of my thinking, reactions and response to my daughter. All those years spent trying to “help” her were years marked by fear, distress and worry.

I know now how sensitive Emma is to other people’s emotions, how she picks up on all of that easily and how distressing it can be for her. So there are things I would have done that actually have nothing to do with Emma, but that would have helped me be a better parent to her. Reducing my fear and constant worry would have been helpful to all of us. In order to do that I would have had to ignore pretty much everything I was being told about autism and what that meant for my child. The information we were given in 2004, the year Emma was diagnosed, was presented as fact. And, as it turns out, it was incorrect. I cannot think of a single thing we were told that did not prove later to be wrong. Think about that for a second… Every single thing we were told was incorrect. Everything. (Richard, correct me if I’m mistaken about this.)

A quick aside – this is where, the way our society is structured has done none of us any favors. If we lived in a truly inclusive society where autism was not denigrated, but was considered just another neurology, no better or worse than non-autistic neurology, where there was no judgement placed on either neurology, but more was treated as fact, where everyone came into contact with both neurologies on any given day in a variety of settings, “autism” would not be viewed with the fear and worry and even terror that it currently is. When I say “inclusive” I am using that word literally and not code for “tolerating” or “understanding” or even “accepting.” I mean a society where all neurologies are treated equal, without comparison of one, which is thought to be superior, to another considered inferior. An inclusive society would mean “accommodations” would be embedded into our daily lives seamlessly and without fanfare, just as the many accommodations non-autistic people enjoy without even noticing them, do.

I would not have sought out the advice of the slew of doctors and specialists we carted her off to. I would have surrounded her with music, singing, dancing, lots and lots of movement, gymnastics, swimming, trampolines, trapeze, art, literature, poetry (much of this we actually did do.) Had Soma begun her center at the time of Emma’s diagnosis, I would have begun learning RPM and implemented Soma‘s suggestions for very young children right away. Beginning with isolating the index finger to point independently and moving on to presenting written choices, for everything and anything – “do you want some M-I-L-K or do you prefer J-U-I-C-E?” Writing each letter, while saying the letters out loud as I did so. Encouraging her to point to the two choices I wrote.

There were many things, looking back, that we did right, things we did for both our children, such as getting her on skis when she was just three years old, horseback riding, lots of hiking, carrying her in a back pack, Emma loved being carried in a Kelty pack so she was able to view the world at the same height as me. We took the children to the theatre, puppet shows, kids concerts, and traveled on airplanes when they were both babies. I began brushing their teeth the minute that first tooth came in, I cannot tell you how grateful I am that I did that. I began flossing their teeth the instant a neighboring tooth appeared. I read to the children and provided both of them with lots and lots of books. We exposed our children to art and literature; these are all things I would not have changed.

“How would you have gone about learning assuming competence?”

Presuming competence is ongoing. It’s a practice, a mind set and it requires a leap of faith. Or at least this is how I have come to view it. Presuming competence is less about an idea and more about doing. It’s an action, one I must be constantly mindful of and vigilant about doing moment to moment. My past thinking is so ingrained, changing that thinking is something I must work hard at all the time. First I must become aware that I have ingrained thinking that is not presuming in my child’s competence, second, I must accept that my ingrained thinking is unhelpful and hurts my child, and third slowly, slowly work to do, and think about, things differently.

I’ve written about presuming competence ‘here‘, ‘here‘, ‘here‘ and ‘here,’ but I will just add that this is very much something I continually struggle to do better. To peel back the layers and layers of misinformation and assumptions that get in the way of being completely present in a way that is nonjudgmental and most helpful to my daughter so that she can flourish is not easy, but it is the single best thing I have strived to do. It requires actively ignoring the more common thinking about autism and what that neurology means. It means actively questioning everything I am told by people who present themselves as experts. It means listening, really listening to my daughter. It means sitting with the discomfort that I have done so much of this wrong. It means forgiving myself for my mistakes. This is the path I find myself on at present.

And truthfully it is Emma who is leading the way, my job is to follow, listen, learn and cheer her on.

“Please try to remember that what they believe, as well as what they do and cause you to endure, does not testify to your inferiority but to their inhumanity and fear.” ~ James Baldwin from The Fire Next Time

If there is one thing I want my Autistic child to know, it is this idea written by James Baldwin. He was writing about race, but his words apply to any who have been on the receiving end of prejudice.

I think about my father a great deal. A proud, athletic man who broke his back in a horse back riding accident which eventually forced him to rely on a wheelchair to get around. My father used to call me every Sunday. We would chat about things that interested him, the weather, his garden, his cat, the dogs, the horses. He would ask me about what I was working on. He was tremendously supportive of my career. I was battling my own demons, demons of my own making, but demons never-the-less that I rarely discussed. I would ask him how he was, but he would always answer, “I’m still here.” I knew that I would have to call my mother to learn about his physical well-being if I wanted anything more in depth. He never complained.

One day I told him I was tired of him always saying he was fine, I really wanted to know how he was. I wanted him to tell me the truth. He said, “You want me to tell you about the constant pain I’m in? You want me to tell you about how my bodily functions are slowing down and what that’s like? Is that what you really want to know?” I remember pausing for a second and feeling confused. And then felt terrible for my hesitation. What I really wanted was for him to be fine. I wanted him to be happy and energetic and well. I wanted him to feel good and he did not. He did not feel happy and energetic. He was in pain. Physical and emotional pain and a lot of it. At the time I wanted to be the one who would change his circumstances. I wanted to be able to make him better. I wanted to save him from his pain. But I couldn’t. I couldn’t.

When my daughter tells me she wishes there was a cure for autism, I feel that same stab of pain. This is the price of our inhumanity. I think how society and my past actions have done this to her. All those people, the media, the articles, the doctors, the therapists who spoke of her neurology as a terrible thing, a neurology that is not understood, that most see as inferior. And I blame myself for having bought into this belief for so many years. The idea that if I could just find the right pill, the right bio-medical intervention, the right therapy, we would successfully alter her brain and make it so she could talk and have conversations with us, so she could learn to “pass” if she wanted to, so that she’d at least have that option if she chose it, despite the devastating price she would have to pay to achieve this. So that she’d have a chance.

But she couldn’t achieve this goal and I learned to stop asking her to. I found other methods, not therapies, not treatments, but rather ways to teach her, ways to work with her specific neurology, and I keep practicing these methods because I have seen how others who created them and have trained in using them are able to converse with her through writing. While I do all that, I keep telling her and showing her that she is loved and of value. She is worthy and perfectly imperfect and deserves to be treated kindly and as the intelligent, sensitive, talented human being that she is. She has as much right to be in this world as anyone else. She is equal to her peers not less. Being indistinguishable is not a goal.

My daughter’s neurology is not inferior. Those who believe this are wrong. My daughter is no more inferior than I am. She has challenges, they may feel at times insurmountable to her, but we as a society can make her challenges easier. It is our inability to lessen her challenges that is at fault, not her neurology. It is our responsibility to challenge our views, to call each other out when we see injustices being done, to treat each other with the same respect and care we would have others treat us. We must never give up. We must never allow ourselves to fall into lethargy or the false believe that we are better than anyone else. We are not. We are human. Imperfect. We need each other. We need to push each other to do better. We can do better. We must do better for our children, for this world, for all humanity.

Jen at Down Wit Dat is doing a blog hop. It is open to all blogs in the disability and special needs communities: self-advocates, allies, parent advocates, and others are encouraged to share posts.

When I was growing up my sister was the “athletic one” and as a result for a very long time I believed I was not athletic. It wasn’t until I started dating a man who had almost no athletic abilities at all that I began to suspect this version of myself was false. It wasn’t that I wasn’t athletic, but more that in comparison to my sister, I wasn’t. These kinds of internalized beliefs about ourselves begin young. I have yet to meet anyone who did not take on some belief about themselves that had nothing to do with who they actually are, but instead was what others said or believed about them when they were young.

With autism there is a whole population of children who are growing up with assumptions about their neurology that will be very difficult for them to reject. When a two-year old is diagnosed and overhears their family, doctors, therapists, and friends speak about them as neurologically inferior it will be difficult for them to not take that on as fact. If they act out in frustration, because what they know and what they are able to say do not match, their frustration is labeled as “challenging behavior”, they are thought to be manipulative or difficult or misbehaving. If they are then punished for these behaviors, the actions they take because their bodies do not do what their minds are telling them to do, or because they are bored out of their minds from being asked to do the same thing over and over, as they grow older and continue to have picture books given to them when they are intellectually capable of far more, I imagine it must only make this perceived belief about themselves all the more painful.

Society has adopted the medical model for autism. It is a neurology seen as deficient when compared to non autistic neurology. It is pathologized because to not do so would mean insurance companies would refuse to help pay for certain therapies that can be very helpful. Things like OT and PT, and in some cases, speech therapy etc would all be deemed unnecessary. But I have to wonder whether there isn’t a better way. After all the cost our children and the Autistic population is having to pay is pretty steep. Their self-esteem is often battered, their internalized view of themselves is negatively affected, ask just about any Autistic adult about their childhood and what they believed about themselves as a direct result of what was said to/about them, even if not in their family of origin, but at school, by other kids, or the doctors they were taken to.

Many talk about how autistic children are trapped and imprisoned by their autism. A few Autistic people have written about how they lived in their own world until they were given the support to communicate. Some have even said they felt imprisoned and trapped by their autism. The image of autism as a prison, is a strong visual image, one that a number of autism organizations have used with great success in drumming up donations and funding. When I read things like that, written by Autistics, it is painful to read. Understandable, but painful. The internalized view of themselves as imprisoned by autism is what others and society has said. But if autism was better understood, if all children were immediately given the help they need to communicate in ways the non autistic population could understand, much of these views would disappear. For a long time I bought into these beliefs, too. But I have come to understand that it is not autism that imprisons my daughter, but society’s beliefs and inability to accommodate her that does.

“Be nice to each other” – this was the final sentence Emma wrote to Soma on Friday before we flew back home. She wrote it in answer to Soma’s question, “Any message to the world? To mankind?”

Be nice to each other.

We returned home late Friday night. I was riding on a cloud of excitement, newly found realizations, solid, unequivocal confirmation and proof that not only is Emma completely aware of her surroundings, but she has profoundly wise insights into the world, other people and herself. She is one brilliant girl. She has managed to learn despite having almost no formal education, she knows her multiplication tables as though she’d been studying them for years. She knows how to solve mathematical word problems, she understands things I have only come to understand very recently and her compassion for others is astonishing. She has been spoken harshly about. She has heard what others have said about her in front of her as though she could not hear or understand. She knows what others think of her, and yet, she understands these things are said in ignorance.

So excited was I, that I slept fitfully, and Saturday morning awoke to blinding, crushing, devastating sadness. I felt the weight, the enormity of my daughter’s life and my role in all that has happened to her these past nine years since she was diagnosed. My mind latched on to each and every misstep, the mistakes piled up so quickly, one on top of the other I felt I couldn’t breathe. I spent Saturday in a state of crisis. I completely broke down. And the thought that continued to blast in my mind was, “How will I ever find my way out? How can I forgive myself for what I’ve done? How does one forgive another who has made the decisions I’ve made? In essence, how can you forgive what is unforgivable? And yet, she has. And therefore, so must I.

Be nice to each other.

And here is the thing about all of this. Berating myself, hating myself, NOT forgiving myself allows me to continue the cycle. It wears me down, threatens to break me when I need to be strong. But I also know that when I am overwhelmed with feelings, telling myself that I must not feel the things I am feeling, does not make them go away. Tamping the feelings down, pretending they do not exist, none of that actually helps me move through them. Criticizing myself for hating myself does not make me hate any less. And so I accepted that this was where I was. And for one day I sat with all those awful, painful feelings and felt them. Neither pushing them away or adding to them by criticizing myself for having them. I sat with them one excruciating hour after the next and allowed them to be. And all the while I repeated Emma’s words, Be nice to each other. And I allowed that to include myself. By Sunday morning I felt my strength returning. I felt that old determination returning. I could feel energy flowing and I knew. I knew. As long as Emma gives me permission to, I will tell all who will listen, at least some of what she is writing.

When I asked Emma yesterday if I could write today’s post using her words as the title she nodded her head, yes, and smiled. Last night before going to sleep she said, “Mommy? No school tomorrow? I don’t like new school.” And so I promised her, I promised I would do everything in my power to help her school understand, but I know I have one hell of a battle before me. And I need every ounce of strength I’ve got in me. But maybe, just maybe some of the video clips I have of Emma writing these things will have the power to change even a few minds so that they will be swayed and will come to understand what I have. Not only is my daughter capable, she has a great deal to teach us, but all of that will be lost if we are not willing to open our minds and listen. This is the non autistic limitation of our neurology. This is our neurological deficit and we will have to work mightily to change that.

I haven’t written anything on this blog for an entire week, the longest I have gone without posting something since I began blogging over three years ago. A combination of things kept me from my routine, the first being – Emma and I were away, traveling to a new place with food we do not usually eat, people, most of whom we did not know, sleeping on beds we weren’t use to. Everything about our environment was different, but there was something else too. Something I can’t completely explain because I haven’t figured it all out yet. Something that was more than just a disruption to routine, something about identity and society and how the two intersect and influence each other, what that means and how that changes the way we live our lives. These are all thoughts that are more like wisps of random words than fully formed structures I am able to describe. I am in the midst of these words, loosely pieced together ideas; I am twirling among them, investigating, looking, feeling and trying to be still in my discomfort of not knowing or being able to define.

Em and I traveled to a place that was created, organized and for Autistic people. I took Emma because I wanted her to experience being in a place where her neurology was in the majority. I wanted her to meet others who are more like her than not. Em has not commented on our time away other than to say she had fun. I, however, have a great many thoughts and feelings about being in such a place. And I suppose the thing I felt more than anything else was how much more alike we humans are no matter our specific neurology. But there is always a danger in making such a statement. I have been accused of “sugar-coating” autism. I have been told my daughter must be “high functioning” because surely if she were like their child it would not be possible for me to have come to a place of not just acceptance, but celebration of all that makes her who she is. Some people have written that by accepting I am giving up. They equate acceptance with resignation and doing nothing. Others have said that acceptance will not get my daughter and others like her the services needed, that the negative rhetoric is necessary.

People have written me that they want to hear about the hardship, the difficult times, the pain… they wonder at my decision NOT to talk about that. To all those who come to this blog hoping to hear about the gory details of parenting an Autistic child – better to move along, you aren’t going to find that here. There are countless blogs that do that far better than I ever could, even if I wanted to. I lived too many years of my life neck-deep in pain and all that was wrong with this planet and my life. And by the way, I did that well before I had an Autistic child. I am more than capable of seeing the world as a dark and miserable place. I don’t need a great deal of encouragement to go there. Perhaps one of the greatest gifts I have been given is that I was once in such tremendous pain and know how easy it is to live in a place that feeds off that misery. I have no desire to return to that mindset.

I am interested in hope. I am interested in both being the recipient of and the giver of hope. Hope gives me energy. I feel invigorated by it. When my daughter types something I have never heard her communicate to me before I am filled with joy. When she says something I have never heard her say, I am filled with happiness. When she performs a new song, in Greek, no less, I feel proud, I feel excitement, I feel the beauty of her voice fill my soul, I feel bliss. When my daughter reads something and makes a comment about what she’s just read I am euphoric. When she tries something new, I am cheering her on. None of this erases the moments of pain. None of this means everything is simple or easy or that there are never moments of sadness or difficulty.

I will and do write about my own challenges, not because of my children, but because of who I am. Placing blame on others for my issues and challenges is not something that helps me change and it definitely does not make me feel any degree of happiness. My best moments with my daughter are spent when I have no expectations and greet each moment with wonder and curiosity.

I say I’m an addict and you envision a bum passed out in a gutter on the lower East side. I don’t look like that bum. I don’t fit that image. So you smile at me and say things like, “well, you can’t really be addicted to food, can you?” or “oh you’re not really an addict, why label yourself that way?” or “you just need to use a little more self-control,” or “why can’t you just stop?”

I call myself an addict, not because I am active, but because I cannot allow myself to forget that my brain is hard-wired that way. Once active, I can’t “just stop.” I call myself an addict because that is the best descriptor of how my brain works. I accept this. I know this about myself. There’s no judgment, it is what it is. I call myself an addict because I don’t have the wiggle room to say I’m not. Whenever I delude myself into thinking maybe, just maybe I can do x, y or z just this once, I’ve opened the door to addiction and I can’t afford to do that. Once I become active, I may be able to stop, but I may not and that’s not a risk I am willing to take. For twenty-two years I lived as an active addict and by the time I finally found the support and help I needed, I was ready to end my life. It is not a way of life I want to revisit. (I’ve written about some of this, ‘here‘, ‘here‘ and ‘here‘.) But people have a tough time with this concept. People who aren’t addicts, find this difficult to grasp. That’s okay. They don’t need to understand it. I just need to keep doing what I’m doing.

There are things I need to do that help me stay “clean”. I need support from other addicts. Those friendships and relationships are not only important, they are essential. All of us have a similar vision for each other and ourselves. We place our shared vision above individual personalities. If a disagreement arises, we try to remind ourselves and each other that our common goal is far more important than whether we like or dislike someone. We try hard to keep away from gossip, judgment and personal attacks as best we can. We talk about progress not perfection. We mentor each other and reach out to those who are struggling.

Within these principles there are a great many tools that help us. For me, the single most important thing has been realizing that when I behave with integrity, and by that I mean, do not lie, cheat, take advantage of another, treat others as I would like to be treated, do my best to keep my energy directed at my behavior and actions, reach out to those who may be struggling, listen, learn, remain curious and tapped into the wonder of life and all that I do not know, then I will live a far better life than if I do not do these things. This also is the only method I know of to stay free from my addictions. It’s pretty simple, right? Simple, but not easy to practice. I often don’t get it right. But I keep trying.

I bring all of this up because there are many of us who have neurologies that differ from the majority. As I said, judging my own or anyone else’s as good or bad, better or worse is unhelpful. It is what it is. We can get caught up in semantics, we can argue about addiction or any other neurological variation from what is considered the “norm”. But more importantly (to me anyway) is the vision. Many do not agree with that either. My vision includes a society of inclusion. I am reminded over and over that compassion and love are actions. Who I am and the way I behave have nothing to do with what others think of me. There are people who need support to do things I can do without thinking. Things I take completely for granted, like communicating. There are people whose lives could be transformed from one of misery to one of purpose if their neurology was accommodated.

In yesterday’s interview, Tracy said, “The man I am today is because my autism is the gift I was given to be a leader to anyone who has ever felt less than human based on their appearance. Martin Luther King knew that hurt and he took it to the mountain of peace. My mind is more like a Mensa candidate than I can type. My life is a testimony to the lesson of humanity. Like Larry typed “More like you than not” is the guiding principle to inclusion.”

Last night Richard and I had one of our conversations. It’s the conversation that starts with, “If only we’d known what we know now…” The conversation that continues with, “If only we’d known our friends, particularly the ones whose neurology we don’t share, the ones who are Autistic…” It’s the conversation that ends with both of us looking at each other and shaking our heads until one of us says, “We would have done everything differently…” And then the other joins in with, “Literally. We would have literally done everything differently!”

One of the biggest motivators I have for continuing to blog about autism is this idea that everything would have changed had we known what we know now. How different our lives would have been had our introduction to autism not been abject fear, but to adults who are Autistic. How different our approach would have been had we not reacted to the news of our daughter’s neurology with terror. How much money, time, energy, not to mention pain would have been avoided had we not listened to all those non-autistic people who greeted our daughter’s diagnosis with, “Here’s what you need to do…” “Here’s the name of a therapist/neurologist/homeopath/nutritionist/DAN doctor, call them now!” “You should try…”

I’ve written about all of this before, but since I typically blog Monday through Friday, many of you may have missed those posts, so here are just a few…

What we were told about autism was WRONG. Everything we were told during those first few years after Emma was diagnosed have NOT proven to be true. Having an Autistic child does not mean the entire family will be dragged down. No one need “sacrifice” their life to support another, in fact, our lives are enhanced by each member of our family. Each of us brings something unique and special to the family. Having an Autistic child is not the same as having a child diagnosed with cancer, this comparison is incredibly hurtful to my child, to your child, it is offensive to all of us.

We have been told all kinds of things about our daughter by non autistic people. Not one of their predictions has come true. NOT ONE! Read that again. Nothing we were told would happen, actually has! Think about that. Being given an autism diagnosis for your child is like listening to an anchorman predict the weather a year from now. But we believed every single one of those pronouncements and then behaved as though each dire prediction was fact. If I’d known all the people I know now, the people I’ve interviewed, whose blogs I read, all the people I am fortunate enough to call my friends, who have changed my life and helped me understand autism and what it’s like living in a world that doesn’t accept them, growing up with parents who believed they were doing what was best for them, but who were being told the same sorts of things we were told… Had I known all those people when Emma was first diagnosed, our response to the pronouncements and predictions given to us would have been to laugh and walk away. Literally. We would have laughed and walked away.

We would not have hired the agency who provided us with round the clock therapists. We would not have shuttled Emma from one doctor to the next. We would not have spent all those nights lying awake, staring at the ceiling fearing what would never come to pass. We would not have lost all those years, years we could have spent actually enjoying and loving our child, but that were spent in fear, engaged in a war on her neurology. All those years when Richard and I felt beaten down, could have been spent embracing this amazing being who has taught us so much. The challenges any parent faces, exhaustion, sleepless nights, worry, these would certainly have been a part of our story, but the terror… the terror did not have to be a part of it.

So here’s the truth about my Autistic child:

She is a human being with desires, wants, needs, emotions and feelings, just like any other child. If I treat my (Autistic) child the way I would want to be treated, with unconditional love, respect, encouragement and support, I will have been a good parent. If I can be kind, patient, vulnerable and willing to examine my preconceived beliefs about what it is to be a human being, while making amends for my mistakes; I will have led a good life.

I’m impatient. I know this about myself. Impatience serves me to do a great many things. It propels me to take action rather than not. It makes me push harder, try harder. My impatience, which usually begins with tremendous optimism can descend rapidly into disappointment and discouragement. Fortunately I am also fiercely determined and dogged in my reluctance to give up which helps mitigate some of my impatience or maybe it just makes me confused. 😕

However, there are a great many things that are not helped by impatience, things like learning a language, learning to type or learning almost any new skill. These are things that take time, practice and patience. So I have to recognize this and continue despite my impatience. This comes up over and over as I work with my daughter. But in working with her, I’ve also come to recognize something else and that is my expectations. Huge expectations, coupled with impatience can do harm. I see that. I’ve been very aware of how it affects me, but how does it affect Em?

I am learning how to support Em in her communication. For example we will read a story together, such as a book Emma chose recently entitled, Who Pooped in the Park? The story details a family outing where the two kids are upset when they don’t see a great many wild animals on their hike, but learn to identify what animals live in the area by the markings they leave. During our session together I asked Em, “What were some of the animals the family identified? One animal starts with the letter b.” Emma then typed, “There was a bear and ciyoty and a deer.” Other than misspelling coyote, this was a terrific answer and correct. We went on to discuss another name for animal poop, which is scat and that all living things produce “waste” of some kind. After our session was over, Richard asked, “So how did it go?”

“It was fine,” I answered.

“It sounded great!” Richard said with enthusiasm.

“Yeah, I guess,” I replied. And then I had a tiny flicker of realization. I was feeling disappointed in our session. I was hoping for some brilliant, philosophical insight. I was hoping that we would have a conversation that blew my mind and when I realized that, I also realized that my desire, my expectations, my impatience had caused me to not fully take in how terrific our session had been. It also made me see how my response may have felt to Emma. Here she was working hard, doing something that does not come easily and doing it really, really well, yet I had not responded with the kind of unbridled enthusiasm I would have hoped for had our roles been reversed.

During our next session we talked about her birthday, which she is very excited about, and the party and various events we’ve planned for her. I tried hard to be aware of my response to what she was typing. I became increasingly aware of my expectations as they arose and did my best to silently acknowledge them before responding with genuine enthusiasm and appreciation for Em’s work. As a result our session was more fun for both of us. Later when I spoke to a friend about all of this he pointed out that most communication is not wildly brilliant, philosophical or even necessarily enlightening. And of course, he’s right. The majority of our communication with one another is about pretty basic stuff. Learning how to communicate basic things is relevant and important. But my impatience and expectations make me forget that.

I have learned over the years that if I want to change a behavior I need to have awareness that I’m doing whatever it is, I then need to have some degree of acceptance that I’m doing it before I can begin to make little changes to it. Those little changes repeated and added up can, over time, create bigger changes. Admitting aloud I am doing whatever it is can be very helpful as well. Without taking these steps however, I have no hope of changing the way I do something.

There’s a great deal of talk about autism and how our children and autistic adults need to work on a whole range of things, but there isn’t a great deal of conversation in the general population about our own neurological deficiencies. It seems to me that if we are going to continue to have this ongoing discussion of deficits, it’s only fair that we begin to detail our own as well. Now that’s a conversation I look forward to having. And while we’re at it, let’s include the positive aspects of Autistic neurology as well, because a little balance is a good thing!

Every few months we take Emma in to have another QEEG done. (Developed about 25 years ago, a quantitative EEG – a measure of brain wave activity is 94% correct in being able to diagnose ADHD as well as see which areas of the brain are overly active or under active.) Yesterday afternoon, we took Emma in for yet another QEEG. They hook up 21 electrodes to her head and have her sit still with her eyes closed. She must be in a relaxed state for them to get an accurate reading. It takes anywhere from 25 minutes to over an hour to get about 5 minutes of data.

Emma knows the drill. She sits in the chair as the technician applies a sticky goop to a metal round end of a long colored wire. The other end is plugged into a machine, which is attached to a computer and the now sticky metal end is applied to specific spots on her head and then covered with a thin gauze. The first time we had this done, Emma was five or maybe six years old. It took more than two hours. More recently, however, we were in and out in less than an hour. Emma doesn’t seem to mind, though it’s difficult for her to sit still for more than 30 seconds at a time without moving her forehead, scratching, talking, opening her eyes, scrunching her face up or any number of other things that serve to hinder the process.

Yesterday was no different than any of the other times we’ve gone in recent years. As we sat, I was aware of how much I want her brain waves to tell us things we are not seeing manifested in her behavior. A cognition, a repairing of the language areas in her brain, a symmetry and regularity which has so far, alluded us. It is impossible for me not to fantasize about coming to meet with her neurologist in another week or so and have him say gleefully, “Congratulations! She has a neuro-typical brain!!” What parent doesn’t want to hear those words uttered? It’s like winning the lottery. “Oh come on? Are you sure you’re looking at the right chart?!” “Sure you have the correct name?” To hope for this kind of pronouncement is dangerous, I have found. The let down, the inevitable sadness one feels when these words are not uttered is too painful to describe. And even when we have heard from her doctor that the QEEG is showing “significant progress” we are left wondering if our definition of “significant” needs amendment. Our hopes and dreams are perhaps too lofty. Our desire to see her one day mainstreamed is, perhaps unrealistic. But what’s the alternative?

So we placate ourselves by reminding each other she continues to make good progress. Her handwriting is coming along beautifully. She has gotten the hang of finding almost all 26 letters on the keyboard, as well as “.”. We move ahead with her literacy program, something which has given us more hope than anything else. We continue to work with her on the proper use of pronouns.